Ok so it’s been a while…I’ve had this started for almost a week and just haven’t been able to finish it! Hopefully today is the lucky day.
Last week was a Sick Kids week. Mr. T had an appointment for a regular follow-up check with his surgeon. They told us, when he was released, that he would be a Sick Kids kid until he was 18 and we could expect to be spending a lot of time there. They were right! Between visits with his surgeon, follow ups with the NICU, the spinal clinic, x-rays and MRI’s we have been visiting Sick Kids every couple of months.
If you have ever been to Sick Kids you know that the hospital itself is beautiful inside. It’s geared towards children so it’s really bright and colourful. There are cartoon murals on the walls and windows. There are water fountains and brightly coloured elevators in the main atrium that most children could sit and watch for hours. It is nothing like a normal hospital. Oddly enough, with what is going on in some of the rooms inside that building, there is no feeling of sadness when you walk in.
I walk through the atrium, happy and cheerful. Mr. T and I usually chat about where we are going and what we will be doing depending on the clinic he is visiting on that day. We will make a visit to the little gift shop they have on the main floor and many times I will buy a little something from the shop since the proceeds go to the hospital. On every trip I get Mr T and I a little treat from Starbucks. It’s like a day trip for us. It’s an outing and we have our rituals.
The cheeriness on the outside is masking the tension on the inside. My days leading up to a Sick Kids visit are stressful. I worry. I re-live some of my experiences. I sometimes dream that I am talking to Mr. T’s doctor and they are telling me that he has to stay there, that he has to have another operation, that he is still sick. I’ve never admitted that to anyone.
Just driving into the parking garage brings back many unhappy memories. For me driving in to the garage wasn’t as terrible as leaving was. At the end of each day Mr. C and I would drive out into the dark, lonely night without our baby. There was always an emptiness inside knowing that Mr. T was up there alone, in his little incubator, hopefully oblivious as to what was going on and we were just driving home…leaving him there. Yet another time when I felt like a failure as a mother. How could I just leave him there and drive away. How could I just crawl into bed while he was laying there all alone?
It’s really strange what can make you remember. I can walk through the atrium and not be swayed. I can look into the windows of the NICU from the cafeteria below and remember our time spent there feeling sad about what we endured but at the same time happy that we are where we are now. Yet, I use their washroom and the smell of the soap will make me want to cry. The strange locks will remind me of how nervous I was that someone was going to walk in while I was trying to figure out how to use that little squeeze bottle they give you when you’ve had stitches after labour. Walking by the pumping rooms will bring back the countless hours I spent in those rooms pumping milk for Mr. T., feeling angry that I had to be in there pumping, instead of being with my son.
I feel overwhelmed when I see other parents walking around in a fog…I know the look in their eye…it says my baby is up there hurting and there is nothing I can do about it. Some of them have red rimmed eyes and those little red NICU parent badges to go along. Sometimes I’ll notice a mother with a slightly swollen belly, who may be walking a little slower than normal. My heart especially hurts for those mothers. I know they have recently given birth. They have not even healed from their labour and they have to endure such emotional trauma.
I avoid looking at the second floor. The second floor is where the surgeries are happening. That is where we spent hours in that little waiting room amongst all the other families whose children were having their surgeries. We spent hours watching the screen on the wall that showed when the children were out of surgery. Mr. T. was the last one out. I avoid looking there because I can see other parents doing exactly what we did that day. I see them staring into the atrium, worried doesn’t even begin to describe how they feel. I don’t want to remember that.
I usually go to Sick Kids alone, just me and Mr. T. With Ms. J entering our lives she comes along with us now for the ride. Occasionally someone will join me, to support me, my mum usually. This visit Mr. C took the day off work and he came along. He doesn’t return to the hospital as much as I do so I think his memories come flooding back a little more vividly than mine do. After 2.5 years of returning, time has dulled them a little. I realized with this visit that I’m not alone in carrying around some of these sad memories. When driving into the parking garage Mr. C. was unusually quiet. When he finally spoke he said “remember the first time we drove in here?” I responded “yes I do” and explained that I always felt worse leaving than coming. Mr. C.’s pain comes in remembering our first trip in to the hospital. When Mr. T. was ahead of us in an ambulance and we were following behind with absolutely no clue what was to come.
During our visit Mr. C had to use the washroom so I suggested we go upstairs as I could change the baby in there while he used the washroom. Once in the elevator I pressed the button for the second floor as there are two public bathrooms there. He whispered to me, “I’m not going to the second floor”. Apparently he has the same memories of the second floor as I do.
I remember a few months after we were home. Mr. T was better by all accounts. He was doing wonderful. Meeting all his milestones. You would never have known to look at him that he had ever had such an ordeal. I remember someone telling me that we had to get over it. That it happened and it’s done and Mr. T was fine now and we had to let it go. I remember feeling so hurt. I wondered if this is what everyone thought. They must think we are weak because we can’t seem to let it go. I felt guilty for talking about it all the time. I felt bad for hanging on to the pain because I knew that there were so many parents out there who were going through so much worse. The truth is, I didn’t know how to let it go.
The fact is that it isn’t over. Yes he’s out of the hospital. Yes he is doing amazing. However we are still dealing with repercussions. While in the NICU Mr. T was eventually diagnosed with Vacterl syndrome. This means he has a couple other underlying issues as a result of his condition. Most will resolve itself however one particular issue, a spinal issue, will be on ongoing issue. Best case scenario, this amounts to nothing. Worst case scenario he will require surgery to ensure that his spine grows straight. It is not over. When I have to go visit the hospital multiple times a year for check ups it’s not over. When he’s still taking medication for reflux, it’s not over. When his surgeon tells me that his reflux can potentially cause long-term damage, even cancer of the esophagus then it’s not over. When I have to sit and watch my two year old, standing on a stool naked, in an x-ray room, scared but putting on a brave face, a face that no two year old should have to put on. It is not over.
Being there with Mr. C and realizing that it wasn’t just me that still carried these memories with me made me feel a little better. My sadness doesn’t consume me, it doesn’t control my life and it’s not there all the time. But every now and then I feel a bit scared. I worry a little more about Mr. T. Sometimes I feel the need to hug him a little closer. I will watch him while he sleeps and wonder how I could ever have lived my life without him. I don’t want to feel like I have to hide the fact that I still carry some of this around with me. Sometimes I feel like someone with PTSD if that makes any sense at all. These memories are a part of me now. I keep them tucked away, deep in my heart and they aren’t going anywhere. The initial sting of these memories may be gone and new memories are joining them but I won’t apologize for keeping them with me. They are a part of us, our lives, our family.
I think that writing about this is helping me heal. I felt silly admitting that I had a hard time getting over Mr. T’s illness because I knew that it could have been so much worse. The truth of it is that it was a traumatizing event for me. My mum actually told me that I should go speak to someone about it. She seemed to understand that trauma of the whole ordeal and thought that it wasn’t something that I could get over by myself and that it would help to speak to someone. I tried, once, and I just felt silly. He was ok. How could I still be hanging on to this? Why do I still want to talk about it? Most people around me didn’t want to hear me talk about it anymore, to them it was over.
I started this blog with the intention of just “talking” because I was feeling lonely, but I think it’s turning into an outlet of sorts. A bit of delayed therapy. My readers are my therapists if you will and for that I thank you.